Amon had some unexpected bleeding this morning.  A little while later our pediatric cardiologist came in shaking her head back and forth and said, “I was going to send you home today.”  Ugh.

Amon was taken off food again…nothing by mouth the entire day.  Seriously bummed.  What a roller coaster this has been.  All day they ran blood tests and we met with some specialists and they did more x-rays.  Nothing was panning out.

Just a little bit ago, they decided to try and let him eat again later tonight.  And we’ll go from there.  He seems totally fine.  This mess, along with his little heart, makes me semi terrified to take him home…how will I know if something is wrong.

But he is happy.  Well kind of.  He had just gotten his appetite back so he has been a little ticked all day.  That means extra Amon cuddles for me though.  So we’ll see how eating goes through the night.  I’ve decided it is, what it is.  We’ll go home one of these days.  And I’ll leave you with cute Amon pictures.

Abdomen x-ray time.

Just let him eat something.

He’s a big hand guy…loves his hands.

Aunt Ashley he loves his dream light…thank you!!!

#1 pass time…other than cable TV.

Hope everyone has a fantastic weekend.  Thank you for all the prayers.  Happy Friday!

I took Spanish in high school and unfortunately was not a very good student.  It’s sad, but I remember very little.  One thing I do remember is asi asi, which means so so.  That was our day…not terrible, not great, but so so.

He is ridiculously cute and I don’t shy away from agreeing with every doctor and nurse and care partner and tech and xray person and volunteer who comes in  his room…yes, he is adorable…yes, his smile is killer, yes, his hair is fabulous and yes, he is such a good, good baby.  He seriously blows my mind.

There was no puke today…praise…but Amon wasn’t very interested in actually eating since he hasn’t done so in 7 days now.  At the end of the day we logged a whopping 4 1/2 oz of pedialyte.  Better than nothing though.

We did our usual of taking walks in our wagon and just chilling watching way too much cable TV and I emotionally ate my way through yet another box of sugar babies.  What is wrong with me?!?!

I love how artsy the children’s hospital is.  There are art displays everywhere in tons of different mediums.  I do love walking around and exploring and finding new displays.

Staying in the hospital this long is really difficult.  Hats off to the parents who have stayed for far too long…my heart goes completely out to them and their sweet kiddos.  I know that sitting on Day #20 I feel very, very down and depleted…I can only imagine how other parents feel.

I miss Josh and Harper and Huddy and Sol terribly.  I feel like I am missing out on so much and it just makes me sad.  I miss being home…together…all 6 of us.  I miss sleeping in a bed.  It gets kind of lonely here too.  And you’ve heard of the Freshman 15, well I’ve gained the Hospital 15…I miss my zumba class and my crossfit class and running.  Why do I emotionally eat?  Why!?!?!?!?!?!  And who is the genius that invented microwave pop up bowl popcorn?  Genius.

But tomorrow we’ll give it another go and eventually we’ll get to walk out of this place.  And that is a very big blessing that I recognize and DO NOT…DO NOT take for granted.  Things can be sucky sometimes, but blessings are still all around.

Happy Very Late Wednesday Night!

Turns out hangry (hungry + angry) babies are pitiful and super no fun!  I feel so bad for Amon and his little fast-athon.  Today was a bit tough, but we definitely had some good sane moments.  Consider the evidence.

A)  A morning walk.

B)  Another walk to meet Micky Mouse.  This hospital is simply amazing with all the things they have going on and provide for the kids and parents.  Amon was super skeptical about this so-called “mouse”…notice the cutting of the eyes.

C)  Fingers.  Apparently finger chewing can help take the edge off.

D)  An afternoon walk with Josh and the wee Kelleys.  Definitely the highlight of our day!

I personally love Harper’s heart hands.

E)  Dinner with my most favorite people in the world.

And F)  The craziest, most awesome mobile ever that has helped keep our sanity in tact.  Lifesaver for sure.

Now if I could just give him a 42oz bottle of milk…that would be awesome.

Happy Thursday!

Well I thought we would maybe be going home sometime really soon and I have now decided that when you enter the hospital your main game plan should definitely be “Expect the Unexpected”…which I think might also be a line for the reality TV show Survivor…I think.  Anyways…So Amon is going to be in the hospital quite a bit longer…like close to an additional 10 days…yep.  He’s having some more issues that aren’t really so tiny anymore, but all the doctors are quite confident he’s going to be just fine…it will just take some time.

The suck part of this is he cannot eat for 7 of those days…today was his first full day with no food.  This makes for a very pissed off baby for the majority of the day.  My go-to “try-not-to-think-about-how-ticked-you-are-right-now-because-you-want-to-eat” move is hitting his balloons down in his face.  He loves it, so I stand for far too long hitting balloons during the day.

And eventually he falls asleep for a bit and we start all over when he wakes back up.

I can also do a bit of distracting by sitting him up in my lap.  This doesn’t always work for a really long time, but definitely a good change from just laying in the bed.  Poor guy…the back of his head is now bald…like bald, bald.  Definitely no match for the front…it’s still fabulous.

So that was the really hard part of our day…but I am so thankful all these hang-ups are happening at the hospital instead of at home.  And I am really thankful for such thorough doctors who caught a very serious problem in time to fix it.  So thankful for Amon and his incredibly sweet heart and his crazy awesomeness and this journey we are on.  I may also be thankful for cable TV.

We had lots of fun visitors today, but my favorite part of the day was taking Amon for a walk with Courtney.  Our sweet nurse helped us become portable and we set out for a little walk.  Amon really seemed to enjoy it and didn’t fuss one bit.  He had not had anything to eat in over 30 hours at this point…6 more days to go.  He’s a little something Courtney likes to call “hangry”…he’s hungry and angry.  The walk totally did him some good.  And we got to get some fresh air as well.  The weather was amazing.

Some more musicians came by last night and sang The Beatles “Here Comes The Sun”…a cappella…it was beautiful, but I’ve decided it was also a terrible selection to sing for parents.  I cried my eyes out…I’m not proud…it may have gotten pretty ugly.

And since nights around here just got a little more complicated with a very hangry little boy, I was able to do a little more art last night since I was up for quite some time.  This 8×10 canvas is for a very dear, sweet woman in my life.  She’s amazing.  Mumford & Sons is just the gift that keeps on giving right now.  It’s true love.

The big wee Kelleys have been living it up while our hospital stay extends on a bit.  I miss them incredibly, but thankful for phone pictures of their days.  The 6 of us need to be back together stat.

Isn’t it just like life to throw those curve balls…always.  But Courtney reminded me again this morning…At the top of my lungs, Hallelujah!  We would still sincerely appreciate your prayers for Amon.  Thank you for all your kindness…it is really amazing and our family is very grateful and humbled by your love.

Happy Wednesday!

**Because I am already getting emails about the not eating thing…the hospital is not starving him…I promise 🙂  He gets TPN…nutrition…through his picc line, so he will not be wasting away.  It unfortunately does not make him feel full…that’s the kicker.  I asked if they could sedate him…they laughed…so I, in turn, laughed too playing it off like I was just kidding…but I wasn’t 🙂  Thanks for your concern.**